Hi Mandy

It is totally understandable you are feeling anxious with panic attacks.
You have been through a lot of complications as a result of your myeloma treatment and you are now facing more major treatment with your SCT and Kyphoplasty. It is such a shock when you are diagnosed with myeloma, but it is also emotionally hard to go through so…[Read more]

Hi Helen

I'm really sorry to hear your myeloma has relapsed. It's no wonder your emotions are all over the place, it's completely understandable.

I think it was very fortunate your consultant recommended a bmb otherwise any abnormalities of cells would not have been identified so early. At least with you quickly changing your treatment…[Read more]

Afternoon Ann

I would phone up your support myeloma nurse at your hospital to discuss your current treatment. Ask when the cyclophosphamide part of your CTD regime will begin, when you are scheduled to take your second bisphosphonate and at the same time you could ask whether there are going to be other drugs introduced into your cycles such…[Read more]

Hi Ann

Good news about your MRI scan results showing damage to only one vertebra. Hopefully you will be able to sleep better when the bones start to heal.

You mention you are on CTD treatment and say you are taking thalidomide and dex steroids, but you do not mention the cyclophosphamide drug which is the initial chemotherapy part of the…[Read more]

Hi Ann

I hope your appointment with your consultant goes well this week and you learn the results of your MRI as well as asking the many questions which no doubt you have thought about since your last visit. As regards planning lots of family events this year, before you actually book anything in advance, I would see whether you possibly…[Read more]

Oh bugger Helen

I really thought your last post was so positive and that may be it was a blip!. How come they have changed their tune so quickly. As Tom said entitled to some soul searching and then bat that damn thing right back into oblivion!!

Its such a blow for you:-(

Love and hugs

Vicki and COlin xx

Hi Mandy

Colin had his SCT in November 2011. Like you he had a really rough ride during his induction treatment. He was in and out of hospital with infections and temperatures, virtually every month for 7 months. Antibitoics etc etc. It was a really long haul. However that said the trial was worth it and he got to SCT and remission!. He also…[Read more]

Hi jacqui,

Yes we go to EJU, and we are now moved to a Wednesday afternoon clinic. All good today and they want to see us again in two months. Colin's back is still bad so thinking what to do next, but they are referring to back specialist. :-). Glad Geoff is seeing Nicky. Colin sometimes says its like a dream (nightmare more like :-(), being…[Read more]

Dear sue,

Our thoughts are with you and Keith. He is a man of great strength and fortitude, who has and is a great comfort. Should this be a final journey, peace and tranquility will await x

Vicki and Colin

Oh jacqui, what a dilemma! But if that is what Geoff wants, go with it!

Colin was very very emotional leading up to sct….and like Geoff, although he wouldn't admit it, his nerves were bad too. He had some terrible panic attacks. He saw the clinical psychologist before he went in for sct. Colin was very anti that before but I persuaded him…[Read more]

Hi Ali,

Glad to hear your mums out of hospital! 🙂 its difficult isn't it knowing who to contact. I asked the consultant when we had our first visit after sct and she said continue to contact them for now. So last week when Colin was really really tired we phoned the chemo helpline and went in for blood test. We felt a bit guilty as they are…[Read more]

Hi Maureen

I'm not sure what normal levels of Kappa/Lambda light chains should be for myeloma patients. All I know is that the cancer treatment aims to reduce the light chains to as low as possible. Mine were reduced from 2,200 to 45 after treatment which were considered to be good, so Ian's results at 52 also look good. What were they before…[Read more]

Hi Ann

Yes, my vertebrae collapsed whilst I was asleep but I didn't feel a thing until I woke up. I lost 3" in height and as a result have a hump in the top of my back. It took me ages to get used of my reduced height. I've shrunk to 5'1" and my one son is 6'2" – he now looks so tall next to me. Like you, I went to A&E the week prior to my…[Read more]

Hi Nikki

I was unable to eat anything and drink very little following my SCT for a good ten days due to constant feeling of nausea, actual sickness, sore/dry mouth which all combined together causing a complete loss of appetite. Even with three different types of anti sickness drugs the nausea wouldn't subside and food/water wouldn't stay…[Read more]

Hi Maureen

I'm so pleased to read your husband's light chains have reduced to a low level. My CDT and SCT were covered with my husband's private medical insurance provided via his long term employer. The actual insurance cover was with Aviva. They were very good at covering all of the bills for my initial treatment.

However, when I had…[Read more]

Hi jacqui and jeff

How are things? Did you get some reassurance?

Vicki and Colin x

Tom,

Good luck. It's strange, but when Colin got,told we were going to,sct it was a huge boost but scary too. It's what had been worked for but when it came to,it we were scared. You can do it as you've got this far 🙂

Vicki and Colin x

Hi Helen,

Yes colin has started to take it easier, a little less tired but is sleeping when he needs to. Got back pain at the moment, he's reduced his meds due to it being morphine based and the pain specialist is going to give him another drug which is not morphine based and can be Taken long term. I do worry about any pain as I always link to…[Read more]

Eve,

Translate attitude for leaving no stone unturned to make sure slim gets the right results. I don't care either…..bet the hospital staff think I am mrs 20(no 100) questions but that helps me to help Colin. Hope you and slim are getting some good nights sleep.

That helps so much, take care both 🙂

Vicki and Colin x

Mary and Charlie,

Relax!!! Just be thorough with cleaning like normal but taking care of handles and surfaces as they are where bugs get transmitted most. Neutrophils are the immune system getting stronger and normally hospitals say 0.5 and patient can go home. It's just like when you are having treatment, the neutrophils go up and down. When…[Read more]